WAITING FOR MY 'GOLDEN TICKET'

[JediReject]

Hi Guys, as some of you will be aware I have been having an uphill struggle to be put onto Ruxolitinib. Well Im pleased to say the day has finally arrived. And as you may also recall I have my own way of recording such milestones so I have penned a few lines to share my experience of it with you. And in doing so I would like to formally acknowledge my gratitude to the Cancer Drug Fund without which my opportunity to take Rux would not be possible at the present time. Let's hope this changes in the near future. Cheers.

WAITING FOR MY 'GOLDEN TICKET'

I reckon I've been a patient patient as the months have trundled me by,

With my frustration mounting at taking HU as my white count rises so high,

Along with the fatigue, the itching, and a spleen so large my belly it sticks right out,

I pressed my viewpoints to my Hem; time for a change without a doubt,

''I'd like to try this 'wonder-drug', surely it must be worth a dib'',

''Oh, you mean the one called Jakafi otherwise known as Ruxolitinib''.

So after a wait of a good six months I finally got my 'Golden Ticket',

Then doubt stealthily ambushed me - If these don't work mate you're on a sticky wicket,

But tis but a fleeting thought as I hand my 'Golden Ticket' over to the chemist lass,

I thought it's odds on they aint got these in stock and for now I'll have to pass,

Hey-Ho a result, ''Do you pay for these'' she asks in an accent clearly scouse,

I'm quick to respond ''you're joking love I'd need to re-mortgage my house''.

Next day I'm up bright and early to open the magic box for my first tab of the batch,

Hmm... looks quite normal content in there but I'm waiting for a catch,

I'm unsure quite what I expected to see, what with their huge cost and all their hype,

So I felt a tad disappointed to reveal what looked to be a common headache pill of a certain type,

And it has no sugar coating so it's a bitter pill to take which has a tendancy to 'stick',

But I swill it down with a mouthful of water and that just about does the trick.

At 3k a box at least they print the AM/PM days on the back of each blister packet,

And here's me with my marker pen out all ready to attack it,

So folks that's 1 down and 55 to go til my next 'Golden Ticket' for Ruxolitinib,

Now I'm hoping it works and doesn't turn out to be a very expensive damp squib.

#######################

[piggie50]

Good luck to you JR. I hope it works brilliantly for you. I've missed your witty and funny comments lately. You always made me laugh! Let us know how you get on.

Judy xx

[JediReject in reply to piggie50]

Cheers for your kind comments Judy. I've been off radar a while, I'm a complex character and I needed time to work a few things through as you do. I am very optimistic about this path Im now on. Rest assured I will keep posting my progress whether it's up or down. . x

[Twinkly]

I'm now going to give you motherly advice ,please ,,please ,, listen to me ,

Try to eat well .eat green vegetables ,try to drink good juice ,try to drink plenty of water to wash away the toxics in your system ,try not to eat fry ups , And pizza,, restrict visits to the fish. N chip shop ,,if you really want to get well ,you need to work with the drug ,

The doctor has put faith in you and now it's up to you ,,your mates and your family want you to be around a longest time ,you know. I do as well ,,think on this you know it's sense ,your blood will come clean if you help to refresh it every day ,, my results at clinic prove it can help you to be well ,if you eat and drink to heal yourself .. Good luck ,twinkly..xx

[JediReject in reply to Twinkly]

Dear Twinkly / Mother = What makes you think I haven't been' listening' to your advice already. It may surprise you to hear that I reckon Im over half way there, I eat a fairly balanced diet, no take outs, no fried food. And I always check where ingredients are sourced. I am grateful for this opportunity and I decided a little time ago - not in the last hour- to make some lifestyle changes to give Rux the best chance of helping me. Of course my biggest challenge is my booze intake which I have reduced by at least 80 per cent thus far. I am drinking plenty of water too. So I'm trying to be a good boy. . Thanks for your lovely sentiment. The way I'm going I will be twinkling away before you know it. X

[malachy]

Brilliant news and a fabulous poem, you have a talent with words for sure. I hope Ruxolitinib works a treat for you. Keep us posted. xxx

[JediReject in reply to malachy]

Thank you Malachy and for all your postings on the forum. I will be updating my progress as Im excited and have a good feeling about this development. Two things already - I took a bath and didn't itch after for the first time in nearly 8 yrs. And my appetite is insatiable, no wonder it says a side effect is 'metabolic weight gain' though at 8 and a half stone wet through Im not overly worried just yet. xx

[malachy in reply to JediReject]

Wow two positives already, that's great news! X

[Twinkly]

What makes you think you don't twinkle already?? Some one who writes with your passion and humour ,is gifted ..and what's more important is that you share ..

I have a good feeling about this new treatment ,( been checking my tea leaves ) ..

And for you I see good things ahead .. Keep the faith .... X

[linds]

Oh I do hope this is the drug for you. I will be thinking of you over the next few months and wish every good thing to come your way - so a bath without itching, fantastic.

x

[JediReject in reply to linds]

Thanks Linds, it helps to know that peops you have never met are supporting you and want the best for you. I appreciate that. I had another bath tonight so I smell luvvly coz I had no man bubbles - except those that these tabs create- so I used my wife's 'creme de femme fatale' . . take care x

[beetle]

Hi JR. About time too! Thank heavens for the Cancer Fund. Good luck, my friend. I hope this is your "golden ticket". I'm praying for you. I can see you are trying your best to be a good boy! (Just don't drop a tablet down the sink or you will feel duty bound to take the plumbing apart to retrieve it!!- I sometimes wonder if we ought to keep them is safety deposit box!) Take care and let us know how you are getting on.

[JediReject in reply to beetle]

Hi Beetle haha you're bob on there when I left the pharmacy with my wee bag - that doesnt sound right - I kept looking around me to see if anyone was going to rob me. Thanks for the prayer.

[Twinkly]

On Tuesday I met a new lady at clinic she has joined the Majic trial ,now taking ruxolitinib

I take 2 in the morning then 3 in the evening .. Everybody is different. Getting the correct dose is the key ,I was told at the beginning . She takes a higher dose than I do. I also must write a diary every day ,logging every up and down ,so the team can monitor me ,

Next month August ,it's a year .i have to give bone marrow ,to test my progress.its the one thing that terrifies me.as I'm awake ,but my nurse ( head of the team) will be there to hold my hand. .I'm telling you all because I hope one day this medication will be available ,to try ..

[skodaguy]

Brilliant JR gave me a right good laugh. Better than a tour around some chocolate factory.

[JediReject in reply to skodaguy]

Cheers Skodaguy. And thanks for your sound advice mate.

[maestromaverick]

So pleased for you mate . Be positive . Saw my harm yesterday and can carry on with Rux for next three months . OK I'm having my problems with it but my concentration is so much better so its worth it just for that . Hope all goes brilliantly for you Mr Jedireject cause despite your horrible problems , you cheer us all up . xx.

[beetle in reply to maestromaverick]

interesting typo in your post! I sometimes wonder if some of our doctors are more "harm" than "haem"!!!!

[JediReject in reply to maestromaverick]

Hi Maestrom - Cheers for your reply. . and for passing on your hopes for me despite the fact that it doesn't appear to be giving you what you hoped for yet. It takes a caring bod to do that for sure. I am feeling very positive at the mo' coz I have been prone to mood swings in these past years. . But generally Im upbeat. . Its also good to know Ive put a wee bit o cheer your way. You'll have to see how the next 3 months go for you and I hope you see some more results xx

[babbittybumble]

Hello jediReject, I hope all goes really well for you and so pleased you have your golden ticket.Take care

[JediReject in reply to babbittybumble]

Yes babbittyb as I said I had to cajole a little but I felt Id got to the stage where I had stalled on HU and I needed an injection of hope into my life treatment wise. Had I not got anywhere I intended to seek a 2nd opinion. As we all know we are just one of many hundreds of patients with a case number, but as individuals when we leave our appointments we have to carry on living and coping with our various conditions and their symptoms so I decided I had to be proactive in determining where I wanted my treatment to go. And going onto Rux at the stage of MF i have seemed logical. And yes, grasping that hard fought for scrip with a smile reminded me of Charlie and his Golden Ticket moment. Thanks for your best wishes my friend

[Twinkly]

Hi there Charlie . Learning to fly has its advantages Mmmmm.dont you fly too close to the sun tho ,,,take it gently , Don't want my golden boy to melt....